The hidden faces of Dear Diabetes

I am not disabled. I am not disabled. I am not disabled… but wait, am I?

For more than 20 years I have vehemently fought the “disabled” label. I am not disabled, I have said. I can do anything you can do and probably even more, I have said. Call me disabled and see what happens to your knees, I have said.

But the reality is, no matter how hard I fight it, I do have limitations. Yes, I can do anything I put my heart and sweat into, but I can’t do any of it without Dear Diabetes. I can’t go for a run without diabetes, I can’t go on a hike without diabetes, I can’t have a baby without diabetes, I cant eat at a restaurant without diabetes, heck, I can’t even sleep without the bloody disease.

Faces of Dear Diabetes part 1: (clockwise) stopped by a low BG on a ride; traveling with diabetes; running with diabetes; waiting out a low BG before driving.

Diabetes does not define me, but it is very much a part of me.

It doesn’t prevent me from walking, talking, reading, writing, working or schooling. But when my blood sugars are so low, and I can’t speak without my tongue getting twisted, I can’t lift my head without a screaming siren roaring inside, I can’t see without blurred objects swimming throughout my vision, I can’t drink without three quarters of the juice slopping down my chin, and sometimes, I’m left in a fetal position silently crying out inside, “help, help, help” – try and tell me that’s not a disability. Or, when my blood sugars are so high, I can’t lift my limbs, my legs, arms, head so heavy, it’s as though a 10 tonne anvil were attached, and my eyes, so droopy it’s as though I downed a bottle of Gravol, and my stomach so queasy, it’s all I can do not to puke – tell me that’s not a disability.

And the time spent on this disease, ohmygawd, it’s shocking. Most people see me test my blood sugars and that’s it. They don’t see the number of times I test in a day – before every meal and snack, two hours after every meal and snack, at least once, oftentimes more, in a night, every half hour for two hours prior to exercise, and then during exercise, every half hour for two hours after exercise, every 15 minutes for an hour or more after a low, every half hour for two hours, or more, after a high, before driving, etc., etc.. They don’t see the number of times in a day I disappear to a washroom to wash my hands, or up the stairs to safely dispose of lancets and test strips and infusion sets; or the time it takes to change my infusion multiple times a week, or the math it takes, even with the bolus wizard, to figure out insulin doses every time I eat. They see a low, but they don’t see the effort it takes to come out of that low, which by the way, happens multiple times a week, sometimes multiple times a day. They don’t see that I can’t work when my blood sugars are low, that I can’t read, I can’t write, I can’t run, I can’t drive, I can’t function. They don’t see me documenting my blood glucose readings every time I test, every time before I eat. They don’t see the regular reviews, the calculations, the analyzing done. They don’t see the intricate, behind-the-scenes diabetes.

Faces of Dear Diabetes part 2: dressing with diabetes; pregnancy with diabetes; waiting out a nasty low BG mid run.

For me, when all is said and done, that averages to about 1,070 minutes a week, or 17.83 hours per week – almost a full day a week dedicated solely to Dear Diabetes. If I did the math correct, that’s 20 days a year; 493 days (1 year and 4 months) over a 27-year span – all diabetes!

Tell me again that that is not a major hindrance, that it’s not a plague of limitations and time constraints. Can you? I can’t.

And so, when I heard from a fellow blogger last summer about the government’s Disability Tax Credit, of which I likely would qualify for, I had to somewhat drop my shield when it came to the disability label. This credit would not only help when I file my taxes every year, it could also potentially result in a significant credit of arrears. I could not pass that up.

After months of working through the system, several frustrations dealing with paperwork and ensuring others who were filling out on my behalf (I’m looking at you hot endo!) did so correctly, I was approved.

So there you go, I have the documentation and the money that officially labelled me in the government’s eyes as disabled, but call me disabled, and you might still get a swift kick in the knees. Some things just can’t be broken ;)

2 responses to “The hidden faces of Dear Diabetes”

This post had me nodding throughout. When you spell it out it is unbelievable the amount of time spent. I have often thought of applying for this as well, however intimidated by the process. You have given me the push I need to try. Thank you.

I am so temped to try and look into the DTC again. You convinced me a little the last time I saw you. I still don’t think I spend enough time on diabetes being on MDI to make it close to the required minimum.
I also know myself and It’s unlikely I’ll look into it. Cuz I hate paperwork and shit. but maybe…
the refund is tempting.

I am a Type 1, insulin-dependent diabetic. I was diagnosed with diabetes at 9 years old – 25 years later, I have never been healthier. I credit a lot of that health to my running, as well as my love for cycling and hiking. This is my journey.